Driving me Crazy

[agpthng]

I am getting ready to search for yet another physician that can help me with RLS/WED Syndrome. I've had it since I was a child, now 53, but only started taking meds probably 10 years ago. I've seen 2 neurologists as well as my general practioner. I need suggestions of what to look for in New Hampshire for the correct type of physicians. When I've done search, acupuncture comes up. I've taken Requip, stopped that, made things worse plus I felt like I was drooling after. Now I am on Mirpex and am prescribed .25 mg per day I try to only take half of that, lately nothing is working either half the dose or the whole dose. I take it at supper time 5-7 pm and have been up for the past 2 nights with it. I wish I had never taken any meds to begin with. But I need relief.

[agpthng]

The last neurologist I saw did suggest that I have my iron levels checked on I was a 17 on a scale of 11-300 for iron levels. I started taking iron supplements daily and currently take 3 per day. The last time I had my levels checked I was up to 52. Her focus mainly was for me to have a sleep study cause she insisted that I had sleep apnea. I kept telling her that I had to sleep to have sleep apnea. My legs ache constantly now daily especially after several days of not being able to sleep. I wished I didn't have to take any meds they either work and I pass out or they don't and I reached my daily dose. I always take at dinner time, don't know if I should be taking them in the morning so maybe they would kick in when I want to go to sleep. But then I would be afraid they would work and I would fall asleep at my desk or driving.

[Yankiwi]

Dinner time, or a little later is right for Requip. I take ropinerol (Requip) two hours before bedtime and Tramadol when I wake up in the night. So far, so good, with about a 70% success rate. Not sleeping is the absolute pits. The moderators will be able to give some better advice.

[ViewsAskew]

Hi agpthng,

Did pramipexole (Mirapex) ever work for you? For example, did it work when you first started taking it, but eventually it seemed things were worse? If it got worse, did symptoms start earlier in the day or become more severe?

If so, you likely have augmentation. If the drug never worked for you, that's a different discussion. Let us know - we'll try to get things sorted.

Also, when you say that ropinerole (Requip) made things worse, do you mean that it made your symptoms worse, last longer, or more intense? If so, how long did it take for that to happen?

Pramipexole takes about 90 minutes to work and lasts about 6 hours. If you take it before symptoms start, say 5 PM, it will be out of your system by midnight or so.

[badnights]

How long were you taking ropinirole for? With a ferritin level of 16, your chances of augmenting on ropinirole were really high. When you say it made things worse, you might be referring to augmentation. Most doctors, sadly, don't know that medication-induced augmentation of this disease exists, let alone how to treat it. There is more info in the links under my signature - the first link is a little brochure that explains it.

[badnights]

I have moved a post from here to a new Topic "Getting ready to sue". Reason: the post requested people to reply, which could potentially have diverted useful discussion of the original topic.

[agpthng]

When I was taking Requip it worked in the beginning, would knock me out, and then my symptoms were getting worse arriving sooner in the day, so I was changed to Mirapex. It was working well in the beginning, and it is still working but it seems I'm experienceing augmentation again. I'm getting the symptoms earlier in the day at the end of my work day. I take half a dose around 5:30 - 6:00 because if I take it too much later and the symptoms start in then it seems I have to take like a dose and a half to stop them, if they do at all. It's getting really old, I'm tired of sitting in my chair and just rocking back and forth, my husband I'm sure is tired of seeing me do this. I put a heating pad on my legs when I can, sometimes it works and sometimes it doesn't. I just don't know what else I can do, some people I've come across have mentioned medicinal marijuana? I don't know if I could get it prescribed if it works. I don't know.

[agpthng]

Is it safe to take an over the counter sleep aid along with Mirapex? I occassionally take lexapro if I suspect that I might be experiencing anxiety, but lately, my need for Lexapro is less.

[Rustsmith]

You need to read the label of the OTC sleep aid to be sure, but most of them can trigger WED because they are based upon the sedation properties of the first generation antihistamines. In particular, Benadryl (diphenhydramine) is a very common active ingredient in these products and is a known bad-actor for WED.

So, in general, OTC sleep products are a bad idea for those of us with WED.

[agpthng]

Thank you Rustsmith, it was a thought. I will go sometimes 3 nights in a row with severe symptoms which means no sleep which makes it worse and then the day after each of the bad nights my legs are killing me.

[ViewsAskew]

agpthng, once you augment on two different dopamine agonists (DAs), the suggested treatment by many WED experts is to stop ALL DAs for at least awhile, possible forever. With rotigotine, the newest DA for WED, some docs might consider trying it, too, but as a patient, I'd want to be off of all DAs for at least a month or two, first. Often, the WED will get even worse when you stop the DA, so many doctors use an opioid to help get through that period.

Until your doc helps you deal with the augmentation, it's likely most things won't help too much.

One you have the DA out of your system, however, you may try several things. You could try the alpha two delta ligands - gapapentin, pregabalin, or gabapentin encarbil. If you serum ferritin level is tested and is at least 100, you could also try rotigotine, a newer DA that is delivered via a patch. If you wanted to try medical marajuana, you could. You could avoid pharmacological drugs and try kratom - which is a type of natural opioid that is available through mail order.

[agpthng]

Thank you for all the good information that I can take with me to my next new neurologist.

[ViewsAskew]

Do consider - if your finances allow - buying the Clinical Management of Restless Legs Syndrome, 2nd edition, by Lee, Buchfuhrer, Allen, and Hening. It's worth it. I've even bought used copies and given to my doctors!

And, look for a post by badnights - in her signature is a link to info on dealing with augmentation. Or do a search on augmentation - there are literally hundreds of posts about it on here, many with great info.

[EeFall]

agpthng,

Many of us with severe WED end up taking an opioid like methadone after having augmented. I took methadone for several years. Then I took a combination of different meds for years including Lyrica and methadone. Now I'm taking Suboxone by itself which works well for me but not many doctors are prescribing it for WED. One doctor told me they have to go through special training to be able to prescribe it. Methadone works well for many with severe WED.

You should be able to find a doctor who can help you, preferably a sleep doctor. All I can say is keep looking for help until you find something that works for you. I wish you well.

[agpthng]

Im just wondering, (from a 53 year old Mom and Wife) for someone who has had this for most of her life, but only taken medication in the past 10-15 years, is there any hope of it getting better for me. I really want to stop taking Mirapex. I wish I had never ever taken anything for it back 10+ years ago which was Requip at the time. I'm afraid what I experience trying to get off of it will be more than what I can handle, and if I get past that, is what I experience for my RLS symptoms going to be worse than they were while on the Mirapex. Do I go back to last Neurologist (3rd one)? She get "harping" about sleep apnea and I kept telling her that I can't have sleep apnea if I don't even get to sleep. My problem is what my legs are doing!